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To see you be brave...



Six years ago this weekend, I did something that I had previously never imagined I'd be able to do. I ran the St. George Marathon in Utah. Honest to goodness, I did not truly believe that it was humanly possible for a person to run for 26.2 miles in a row until I crossed the finish line that day. In the 6 years since then, I have thought back on that marathon time and again as I have gone through other challenging life experiences.

This past Sunday, one of the lessons at church brought back vivid memories of my marathon experience. The lesson was based on a talk from the April 2014 LDS General Conference, titled "Bear Up Their Burdens with Ease" by David A Bednar. It's a great talk that I have read and re-read several times in the past few months. During the lesson, we discussed how drawing ourselves to Christ does not remove our burdens, but rather gives us the support that we need in order to bear what we are asked to bear.

As my thoughts drifted back to the marathon, I remembered vividly the daunting feeling of impending dread mixed with excited anticipation as my running partner and I huddled together in the dark at the starting line with the 7,000 other people that were running that day. Right at that moment, I did not want to be there. I wanted to be back at the hotel in the nice, warm, cozy bed where my husband and baby were sleeping peacefully.

As the race got underway, I found my rhythm and cruised along comfortably for a while amidst a sea of runners wearing makeshift garbage bag rain ponchos. {did I mention that it was raining?} The first half of the course was mostly uphill and the weather fluctuated as we plodded along, but it wasn't. There were bursts of heavy rain and times when it almost completely stopped. Coupled with the extra body heat generated by climbing a hill with a 250 foot increase in elevation over the course of 1 mile, I decided to shed the rest of my extra clothing. I thought I was making a good choice based on what I could see at that point. I paid dearly for that decision for the next several miles as the rain started to pick up again. I was soaked to the skin, freezing cold, sore, exhausted, hungry, thirsty, and miles from civilization. Every now and then, an ambulance or shuttle bus would drive by, carrying runners down the mountain into town for medical treatment. I knew that there were only 2 ways to end my misery. I could give up and take the ambulance back to the finish line, or I could keep running. No amount of praying, pleading, or bargaining with God could get me out of what I had gotten myself into. It was up to me.
That is a fake smile. And also, I picked those sopping wet gloves up off the side of the road because I was desperate.

I was not left completely to myself to fight my battle to the finish line though. There was support in many forms throughout the course. Every couple of miles, there were aid stations. Some had cups of warm water or Gatorade. Others had snacks, energy bars, and people who would rub Icy Hot on the fatiguing legs of runners. There were photographers taking pictures at certain points in the race, which is surprisingly inspirational. Nobody wants to look bad in a picture, after all. At each mile mark, there was a Port-A-Potty with a mile marker sign on it. There were spectators at various locations along the course. They held encouraging signs, clapped, and cheered for everyone that ran past. There were more signs, some funny and some inspirational, all along the race course as well. None of these people could take my burden away from me. Running the race was my cross to bear, if you will. What they COULD do was be there for me when I needed support.

Parallels to marathon running can be drawn to so many situations in life. Running a marathon (including the months of training leading up to it) was hands down the most physically difficult and demanding thing I have ever put myself through. (although growing and birthing 5 babies is at the top of that list too) What has been on my mind in light of what has been happening with Raya recently is the parallels between running a marathon and Raya's chronic medical challenges. The lesson in church on Sunday helped me to connect the dots between those things. I had the distinct impression that Raya is in the throes of a figurative marathon, and my role now is to be one of her supporters. To be there with the figurative cup of warm Gatorade. I can't do any of this for her, and as all parents do, I have had to come to terms with that. I wouldn't necessarily say that I wish I could take all of it away, because she would not be the same child if we did, but I do wish I could somehow save her from some of the worst parts of it.



Thinking back to my marathon, one of my most vivid memories happened on mile 19. If I had to choose one word to describe mile 19, it would be despair. Complete and utter despair. With 7,500 runners in the race, there had always been other runners around me, but somehow I ended up completely alone for a stretch during mile 19. The rain had picked up again and the road curved so that I was headed into the wind. My legs were numb but ached, and I could feel the blisters forming on my feet. I was soaked to the skin from head to toe, even through my shoes and socks. All of my skin that wasn't covered by my spandex shorts and sleeveless shirt was bright red from the cold and the rain. I have never been so cold and miserable in my life. I felt like I had been running forever. There are no words to describe how badly I wanted to be out of that situation immediately, but there was nothing I could do about it. I had no choice but to keep going.


And so it goes with Raya. There is nothing she can do but keep on living in the body she was given. At times, everything runs so smoothly that she almost seems like a typical almost 5 year old. Other times, like her "mile 19," we wonder how in the world we will ever get her past this. Two times this week, Raya had to go under general anesthesia to have her unusable GJ tube changed. Two times, I dragged her away from all the things she would rather have been doing, dropped her baby sister off at a friend's house, and drove her to the hospital. Two times, she didn't want to be there. Two times, anxiety upset her stomach and we had to drain it into a bag so that she didn't vomit what was backing up into it from her intestine while she waited to take her "hospital nap." Two times, she wanted nothing more than to be out of that situation immediately, but there was nothing she could do about it. She wanted to go home, but she had no choice but to submit to what needed to be done.


Raya loves to sing along to the radio. It's amazing to me how quickly she learns song lyrics. That's not always a good thing, but there is one song that I love to hear her sing. Over the past couple of months as we have really started to focus on helping her to find the words she needs to express herself when she is upset, scared, frustrated, or not feeling well, the lyrics of this song have taken on new meaning to me. The song is called "Brave" by Sara Bareilles.

"Say what you wanna say
And let the words fall out 
Honestly I wanna see you be brave
With what you wanna say 
And let the words fall out
Honestly I wanna see you be brave"

We heard it in the car on the way to the hospital Monday morning. As I sat next to her and watched her struggle with the fear she was feeling, that part of the song ran through my head. It makes me so proud to see her suck it up and handle the things she has to handle, but I wish so much that I didn't have to make her do all of these hard things. I wish that she didn't HAVE to be so brave. One of the hardest parts of being in a children's hospital is watching as these innocent little kids are asked over and over again to be brave while scary, painful things happen to them. Hold still while we poke you with needles. Let us stick this camera up your nose and into your throat. Don't move while we strap you down so you can be scanned or x-rayed. We're going to teach your mom how to pin you down and put a tube in your nose so she can do it to you at home instead of bringing you to the hospital if it comes out. Let us take you in a cold and scary room where your parents aren't allowed to go and put you under a giant machine and then hold still while we thread a new feeding tube through the hole in your stomach and into your intestine. So yes, I want to see her be brave, even though I wish she didn't have to be. I want her to be able to handle all of those "mile 19" moments that she can't get out of with all of the grace and dignity that a 4 year old can muster.

Thankfully, even the crap of life has its funny moments. In the midst of the misery during mile 19, right as I felt like I just couldn't do it anymore, the Pink Floyd song "Comfortably Numb" came on my mp3 player. I didn't know whether to laugh or cry and so I did both. Thanks to the cruel irony of my fingers being too cold and numb to push the "skip" button, I was forced to listen to the entire song on rain-damaged ear buds. I couldn't help but laugh.


Raya's journey has been peppered with moments of hilarity as well. Thursday evening as I got ready to give Raya her evening doses of her medications, I asked her to pull her shirt up so I could connect the extension to her J port. I didn't realize that she had not seen her new tube yet and did not know that she no longer had a G-Jet, but rather a MicKey GJ. They perform the same function, but they look very different:


I wish to the high heavens that I had her reaction on video when she saw the new tube for the first time. It went something like this:

Raya: *shocked face* What tube is THAT?! *sigh* I wish I still had a GJ tube.
Me: This is a GJ tube too, it's just a MicKey GJ instead of a G-Jet. This port is the G and this one is the J.
Raya: Ugh, I HATE this tube! I don't LIKE it with the G over there and the J over there! How is THAT even supposed to work?!
(I opened the one-piece cap that covers both ports and connected the extension to the J port)
Raya: And Mommy, why is the G like that? {meaning why isn't there a separate cap on the G port} That's just silly. How is it supposed to be open like that? *sigh* I hate this tube.


I could not help but laugh! Everything she said about the new tube was exactly the way I felt about it! She went on and on with her little rant, and I decided that next time I have a discussion with the interventional radiology docs about which kind she needs, I will just let her explain to them why she doesn't want a MicKey GJ!




None of this is what I had pictured when I was holding my sweet little newborn Raya.
She has a good life, but it is hard for her in ways I never could have imagined back then. Sometimes things don't turn out the way you think they will or the way you want them to.

During my marathon training, when I pictured what my glorious, triumphant finish line picture was going to look like, this was certainly not what it looked like in my head:
And I may have shed a tear or two about that too, but it was still an incredible experience that I wouldn't trade for anything. If I could go back and change any part of that day, I would choose not to, because the outcome would not have felt the same. Not even my ridiculous finish line picture. (did you notice that there's a turtle on his hat?) I wish Raya did not have to do so many hard things, but I hope that someday she will look back on these experiences in her childhood and know that they are shaping her into the person God wants her to become. I love to see her be brave.




*If anyone should happen to be interested in reading about the rest of my marathon experience, it can be found here.*

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